Chronic illness: the parts we don't talk about

Category Archives: chronic illness

If you are old like me, you remember that song (just click on the link above if you want a trip down memory lane).

Today I wished that the healthy one, S, had a Mic-Key button. This is an enteral feeding device that is basically a piece of tubing that you put into the stomach so that you can put food/medicine directly into the stomach.

F gets all her medicine through hers.

Yesterday S had minor surgery to repair her thumb – the top came off, nail and all, in an accident at school. She has lost the nail and hopefully it will grow back. In about 6 months. I wrote about it here

Her bravery carried her through the poking and prodding of the doctors, the gas to sedate, the local anaesthetic. It lasted until she came home and we tried to take her coat off.

All the fear, terror, and pain came together to overwhelm her.

THEN we tried to give her antibiotics. She is in very deal danger of developing an infection in the blood but of course she doesn’t understand that. She’s little.

And it tastes yucky. She’s scared of it. Transference perhaps? But actually who cares. I need to get the medicine in her.

And in her own words:

Can I have a Mickey like F has?

That would make both of our lives so much easier right now. How do you guys get your kids to take their medicine?

You’d think we’d be masters at this: we do give F medicine every hour that she is a awake (and through the night too). But we have never had to make her drink it. She has a Mickey button so we always use that.

Now the healthy one needs to have medicine and she’s fighting. And it’s tough.

So today I wished she had a Mickey too.

p.s. chocolate is not a great motivator for this little sugar addict – I mean seriously chocolate, how could you let me down like this? Lollipop, you’re up next.

It’s been 3 years. When I got the text, it really threw me. I haven’t been able to sleep since.

Dearest W, I can’t believe it was so long ago when it still hurts so badly. In the first few days or weeks after you did it, I was still in a daze. I don’t think I really understood what had happened. Seeing you in hospital afterwards, well, those images I can’t get out of my head. But you are at home now, have been for a really long time. You’ve even grown so tall. But I can’t see you.

And although I live in another country, and we don’t come over very often, that’s not the reason why I don’t come in and at least say hi.

And it’s not because you can’t say anything back.

It’s not because you might not even know that I am there.

And it’s not the 24 hours nursing care you have that gives little privacy.

Those are all the things I tell myself to explain why I don’t come in to say hi.

You see, I’m terrified. I’m scared that this could happen to me one day too.

The lat time I saw you conscious, there was a look in your eyes that I also cannot forget: despair. Pain. Abject…. absence of good feelings. I remember saying to J that I wondered if you were ok, but something deep inside me recognised that look, and ran away from it. I’ve been there. That place where you just want it all to stop. Just stop. Everything.

I regret so much that I didn’t hug you in that moment. I don’t think it would have made a difference to your plans. But perhaps for a moment you would have felt something.

So W, maybe you are wondering why I can’t see you. When I recognise it and I know what it’s like when you can’t ask for what you need. When I know how even the smallest gesture can change your world. Why do I not come in to see you?

Well, my reasons are selfish. It hurts too much.

When I see you, I remember my darkest days and I don’t want to remember them.

The future for me is not bright, and you remind me what I am fighting against. And I really don’t want to see that either. My depression is linked to my other illnesses. My endometriosis and resultant IBS mean that I have inflammation in my body all the time. Did you know that inflammation and depression are linked? I didn’t know that either. Before.

When I get close to your door, there is a part of me that shrivels up and hides. I think it’s my courage. And it gets replaced with a middle aged, overly polite British person and suddenly I’m all “Ooh, best not disturb them. Don’t want to make any trouble”. And I am overcome with an inexplicable urge to pop to the loo instead.

This time last year I was in a much better place. Radically changing my diet, lifestyle, everything, was working. I’m still careful about what I eat, I’m exercising, business is going well, I’m socialising, and I colour in my colouring books (art therapy). All the good things I need to do to not lose my mind. Yet I’m losing it anyway. So I’m running away from the most powerful feeling I’ve experienced in my life: the apathy. I don’t want to go back to that place. and I’m sorry, but that’s where I go when I see you, or even think about you.

This is not the legacy you wanted, and believe me, it is not your legacy. This is all on me. This is all my weakness, my fear, my thoughts.And I’m so sorry for the truly awful thing of looking at you and seeing only me.

One day, I’ll be able to look at you and see you. See. You. I’m working on it and I don’t know when I will get there but when I do, I’ll come in and say hi.

Note: please don’t leave any comments on how to treat my Endo. I know what I need. And what I don’t have yet, I’m trying to get. It’s just hard to find. And I’m not suicidal. I just wanted to point that out to reassure anyone who is worried, but also to make a point: we can be in a dark place and talk about our dark thoughts. And we need to be able to do this without worrying about getting weird looks afterwards or being put under safe watch. That’s not the place I’m in. In fact, we need to be able to talk openly about this side of life. That’s why I’ve shared this today. This is just what I am carrying. You do not need to take it over and carry it for me. Please, just witness it. Just let me share, knowing that someone has heard.

So if you’ve been following my blog you know that I am the queen of “give it time” and “fight for help”.

Waiting for your child’s health to become stable, for them to start eating, to stop vomiting…. it takes a multidimensional approach and time.

And sometimes, you just need to get in the doctors face and say “enough”. Now you need to listen to me and do something about the vomiting, not eating, etc.

It’s a balancing act and it requires a lot of strength, patience, and fortitude.

Well, it turns out that I’m pretty good at doing that for my daughter, but not so good for myself.

My endometriosis, IBS, and depression got really bad a couple of years ago and I took action. I tackled the IBS which helped the depression (did you know that there is a link between inflammation and depression? Well that’s were my depression was coming from and I changed my diet to reduce inflammation en voila, I felt physically and mentally better).

The diet change for the IBS has also alleviated some of my endometriosis pain. It’s brought it back from constant and excruciating, to just pain most of the time and manageable (manageable for someone whose just so glad not to be in pain everyday).

Which means that for the gynaecologist I saw in Jan, I am no long “sick enough” for them to offer anything other than pain ills and contraception.

Nice. I’m contraindicated for both. Thanks Mr and Mrs Specialist. How is that I understand my illness and medical records better than you?

So I’m currently caught in this other type of balancing act:

If you help yourself, you are no longer sick enough for the doctors to help you

If you don’t help yourself in every way you can, then you are in a lot of pain

How do I find that sweet spot between

being seen as ill enough for the doctors to actually do something

and

not being in excruciating pain?

LIE. Just lie about it.

That’s another balancing act for people with chronic illness:

Truth versus Honesty

So at my next appointment I’m going to describe how it used to be. Pretend that I still have it. Because endometriosis is a progressive illness, and it creates inflammation in the body.

The truth is, I need help. But honestly, it’s not as bad as it was.

But as I wait, I can feel it getting worse. Both the physical pain and my mental state.

And do you know the worst thing about depression? It robs you of your will to do something to help yourself.

Actually, this is the worst thing: you start to feel worse. You are also quickly losing the capacity to take action and help yourself. You feel the darkness coming and you do nothing.

Well, I’m not doing “nothing”. For starters, I’m writing about it. Writing really helps me to get clear about what’s going on in my head, in my body, in my soul. It’s a way for me to figure out what to do next. So now I know. Lie my pants of and make the doctors help me.

“Oh, they’re a picky eater? Well, you’ve just got to be strict with them”

“Don’t spoil them”

“Let them go hungry. They will soon give in”

“When they see other kids eat, they’ll eat”

Some of the wonderful and pointless advice I have received over the years. And if you have a child who has difficulty with eating, then you’ll understand me when I say that there are two camps on the topic of kids and eating.

Camp 1

My kid had no problems and I think that’s because I’m a good parent. Do what I did and you won’t have a problem.

Or

My kid eats but I want them to eat more healthily. They ate the carrots yesterday but today they threw them on the floor. Oh my god, my kid has an eating problem!

We talk about this a lot and give advice to others whenever we can.

Camp 2

It’s nuts. Eating is something that all animals do naturally, without event thinking about it. But my kid has real issues with food and the process of eating. So how the heck do you teach an activity that is instinctive? Yeah, that’s what we are trying to figure out.

We get advice all the time but rarely get listened too.

And ok, there is a third camp. A camp of people who feed their kids, their kids eat, mostly, and they don’t worry about it too much. But they also tend to just get on with it and don’t give meaningless advice to others.

I’ve been in Camp 2 for the last 8 years. It’s been a long road. It’s tested my patience. I’ve questioned my parenting hundreds of times. I’ve let the whole thing go (my daughter had a feeding tube so what the heck) and I’ve worked at it like a demon. I wrote my side of the story on how to actually help your kids to eat in this post 8 ways to get your kids to eat

And in 3 words? Give It Time.

But today’s post is a celebration. A milestone has been achieved in our household.

F, my daughter with the incurable kidney disorder, the one who drank Maggi flavour enhancer, neat(!), for about 4 years, the one who didn’t eat more than crumb size bites until she was 5, the one who projectile vomited at the touch of a banana, the one who had to learn how to move food to the back of her throat so she could swallow it, well she ate a baked potato. With tuna mayonnaise. And a little bit of salt and butter.

A complete meal.

Not bits and bobs. Not a collection of random food stuffs. Not just a single item like tuna or a plain tortilla wrap dipped in ketchup (yes, that really was an acceptable meal for her for a long time).

A complete meal.

AND

She took a complete, normal sized bite. You know, the amount of food you can get on a teaspoon and that any other kid of 8 would eat. You know, where the food actually fills your mouth completely.

AND

She didn’t vomit or gag.

She just ate it. Said it was delicious. Then took another bite. And another bite. And another. Until it was finished.

I cried. I held my tears inside because, well, she would just think her mum was a freak. Can you imagine taking a bite of a baked potato and seeing your mum cry because of it? She’d call a doctor.

But inside I cried with joy.

She ate! a complete! meal!

I want to add exclamation marks everywhere because all the words are so exciting and so important!!!!!!!!!!!!

And you know what else? She loves spicy tuna maki. And eats the whole thing. Not just picking a few grains of rice out and drowning them in soy sauce (because really, that’s how she used to eat them). SHE EATS THE WHOLE THING

I know there are so many other battles still to face. So many other things she needs to learn how to do to look after herself, and I’m not even talking about her medical routine. But she can eat. She can finally do that one thing that so many of us take for granted. She can eat.

Woohoo!

For all of you who are facing this challenge, a child with difficulty eating, I just want to say:

Hang in there. You’re patience is just perfect. You’re impatience is natural and sometimes will give you the push your child needs to be challenged. And take time to celebrate the milestones. Because there are many along the way. The first bite. The first time the food stayed in. The first time they say “can I try that?” Enjoy them all.

Who would have thought that baked potato with tuna mayonnaise would make me cry with joy?

You’ve been busy lately and you’re winding down and settling into some rest and recovery time.

Then something terrible happens: you get an invitation. To a party. With other people, probably also people you don’t know and who don’t know you.

If you are asking “why is this a problem?”, then you have never run out of spoons before.

When you are chronically ill, management of your spoons is important. And so is living a full, happy life. And we want it to be full, don’t we?

So this invitation has come along when you are just out of spoons. You yearn to go, let off steam, have some fun. Your good friend has turned into a devilish temptress telling you

it won’t be the same without you. please come. We’ll all have a fantastic time if you are there

Now, even if they don’t say those exact words, it may feel like this. Because you want to go.

To go or not to go. That is the question.

Do you say no? Disappoint them? disappoint yourself? But take care of yourself because you’re out of spoons and what you really need to do is chill out and rest.

Or do you say yes? And go, enjoy yourself, but in the process get so used up and knackered that you are going to spend a week in bed. Silently wishing for an adult nappy

so that you don’t have to get out of bed to pee…

(No! not in that adult baby fetish way. I was going to add a picture for a laugh but I googled it and it was just too disturbing.)

And if you say yes, you’re going to have to borrow against future spoons, using energy you don’t have yet so that you can stand upright, smile, laugh. But borrowing future spoons is like borrowing money from the mafia.

The interest on your future-spoons loan is going to cripple you.

That simple invitation has turned into a poisoned apple.

Finding Shades of Grey

Now I’ve been living with a cocktail of energy draining, sometimes debilitating illnesses for some years now (IBS, Endo, depression, perfectionism and its burn out consequence) and I’d be a hermit if I hadn’t learned to adjust. And with my eldest daughter having a seriously intensive chronic illness, I couldn’t afford to keep on using up my spoons. I had to make a change.

I have always been a full on, “if you’re going to do something, do it well” kind of person. And although I thought I was lazy, my standards are sky high (that’s why I consider perfectionism an illness).

I was a very black and white thinker. But luckily for me, my eldest taught me how to think in grey.

So now when I get that invitation, there is another dimension to my choice of go/don’t go. I have multiple options:

I can go and be lively, chatty and dare I say funny.

Or I can go and find a comfy chair and chat quietly to one or two people.

I can go for an hour. ok, it always ends up longer but I blame that on my #shopkeepersyndrome (you’re the shop keeper so you can’t leave first, you need to be there for others and need to be the last to leave – when it’s closing time and you have the keys). But I can now leave a party early.

I can stay at home and arrange to see them another time.

I can just say no, no explanations, but I’m sorry that I can’t come.

I can even stay at home and actually rest, go to bed, sleep.

So many shades of grey. So many options.

None of them requiring me to resort to adult nappies because I’m too exhausted to get out of bed.

This blog is all about living with chronic illness but what happens when you get better? It should be party time right? Life is wonderful. This is what we have been praying for. It’s celebration time, come on! (cue Kool and the Gang).

Yet, it’s not all party and celebration. You actually land in a world of mixed feelings. You’ve lived with this for so long, and now it’s gone. A big part of your life has disappeared and it’s replaced with emptiness.

It’s not a sad emptiness though. It’s kind of exciting. It’s a

Oh my god, what can I do with all this extra energy?

kind of thing.

And with that excitement comes some fear. You see, there is comfort in the known. Better the devil you know and all that. In this emptiness, anything is possible. So that means it could be both good and bad. And it probably will be both good and bad.

There are two common thoughts that run through our heads and I experienced them both last year.

Is this really over?

Oh my god, it’s over. What now?

1. Is this really over?

in 2014 I started an exclusion diet for my IBS. I was in pain everyday and the inflammation was making me depressed. As in, need medication because I don’t care to live, depressed. Cutting out foods from the high FODMAP list really helped. And by June 2015 I was symptom free. It was an amazing feeling, to be pain free! I was in an almost constant state of bewildered surprise, thinking

So this is what it feels like to be normal?

Until September. When my endometriosis hit a tipping point and triggered my symptoms again. So I’m actually now back to daily pain. I’m still excluding the high FODMAP foods (otherwise it would be excruciating). The pain is also different. I can feel that it’s coming from the endo; its a very specific kind of pain.

So, it’s not really over. Not this pain. And while I really enjoyed those pain free summer months, I still feel a little bit knocked down that all my work didn’t lead to a cure. But I’m picking myself back up. It’s a slow process; the drop from my euphoria was quite high.

2. Oh my god it’s over, what now?

In October last year I came of my depression meds. I was on them for 1 year. Although I hated the being on them, the hate was aimed at the necessity and the side effects. My mood was stabilised but it was stabilised at a constant, low level grump. I had a small frown on my face all the time.

And I was constantly hungry. I wanted (and did) eat all the time.

My main therapy was my exclusion diet and it worked. IT WORKED! I’m still so excited about it that I needed to shout that. Certain foods that were causing inflammation in my gut (hence the IBS) were also affecting my brain and mood. I can guarantee now that if I eat gluten, I will become miserable (I just did a gluten test with spelt at the new year and ended up feeling like my life was pointless).

So in October I came off my meds. I was so excited about doing this, and yet there was a whisper of concern. Subconsciously I was thinking

I’m never going to feel sad again. I can’t feel sad again because now I’m cured.

It doesn’t make sense but this is what was going through my head.

If I don’t need the tablets anymore, then I must be happy.

Which is true, but there was a hidden “Always” in there. That I must be happy, always.

Now that I had finally reached this stage, I am no longer depressed, it was scary.

So what am I now? My depression didn’t define me, but it also took up a huge amount of my energy, time and attention. Now that it’s gone, it’s left a big hole. This leaves me with the big philosophical question of

What is my life all about? What’s next?

So yes, I know and have accepted that I will feel sad, blue, down in the dumps. It’s normal. It’s the blackness, the heaviness, the apathy that has gone.

So now I’m enjoying the absence of apathy and blackness. I’m having a look around at the colours. I’m trying to figure out what to do with all this extra energy I have.

I must confess, this last week I wasted a lot of it. I’ve been so used to struggling that I became a little lost. And the irony? I struggled because the struggle was gone.

So if you know someone who has just had good news about their health, please don’t be surprised that they are not celebrating.

They are wondering if it will last.

They are coming to grips with the vacuum.

Don’t expect them to be over the moon. Don’t expect tears of joy. It will come. Give them time.